Group monitoring services for Mainers with disabilities down to 5 of 15 members

Contributed photo | BDN

Contributed photo | BDN

Colby Roderick, 20, is shown at his Bangor High School graduation ceremony in April. Roderick, who has autism, is facing a discharge from the Hermon group home where he lives, meaning he'll need to find another place to live in a strained system of services for adults with intellectual disabilities and autism.

An independent board charged with overseeing the state’s services for adults with intellectual disabilities has just five of the 15 members it’s supposed to have under state law. And Gov. Paul LePage’s administration hasn’t been sharing much of the data to which the board is entitled under the law.

The volunteer Maine Developmental Services Oversight and Advisory Board is tasked with independent oversight of the state’s developmental services system, which provides services to about 6,000 adults with intellectual disabilities and autism. Those adults, under state and federal laws, are generally entitled to state-funded services that allow them to remain in their communities.

But a lack of members and a lack of information about the developmental services system are complicating the board’s ability to oversee it.

LePage hasn’t made any appointments to the board since January 2016, and he has either ignored or rejected the last two slates of nominations the board sent to his office, according to the panel’s annual report released earlier this month. In addition, since 2016, the state Department of Health and Human Services has shared little of the data on services to which the board is entitled under state law.

In 2010, the board’s existence helped release the state from decades of court monitoring of its system of services for adults with intellectual disabilities. In releasing the state from the court’s oversight, U.S. District Court Judge George Singal cited the board’s predecessor, the Consumer Advisory Board, as a mechanism that would keep the state from backsliding on its legal responsibilities to residents with cognitive disabilities.

The board’s latest annual report cites a number of areas in which the state is falling short in fulfilling those legal responsibilities — including a failure to maintain enough crisis beds for adults experiencing behavioral crises that endanger them and those who live with them, and the lack of required annual reviews of the Medicaid rate paid to operators of group homes that house adults with intellectual disabilities.

The annual report also contains the information about a shrinking membership and a fraught relationship between the board and DHHS.

Board members have tried repeatedly over the past three years to fill out their ranks with only limited success. The state law that governs the oversight board requires that current members send nominations to the governor, who then appoints members. Members are supposed to include adults with disabilities, parents and guardians, and service providers.

Throughout 2015, the governor ignored the slates of nominations board members sent him and didn’t make any appointments. He did the same thing in May 2017, when board members sent LePage the names of three potential board members, including the state’s former chief advocate for adults with intellectual disabilities and the parent of a young adult with autism.

In February, the board sent four more nominations to LePage — two adults with intellectual disabilities, a longtime service provider and the guardian of an adult with a disability — and the governor declined to appoint them.

“[T]he candidates you proffered were fully vetted, however, they were not selected to serve as appointees to the MDSOAB,” read a note from LePage’s office, which invited other nominations.

In an email, LePage spokeswoman Julie Rabinowitz didn’t explain the reasons behind the governor’s lack of appointments to the oversight board. She noted that LePage “is under no obligation to appoint individuals recommended by a committee to a seat on that committee” and that “candidates who reflect his values and concerns, particularly in making key reforms, are more likely to be appointed to boards and commissions than individuals who hold opposing viewpoints.”

The governor’s office, she said, will likely review another slate of candidates for the oversight board in September.

Mark Kemmerle, the board’s executive director since April and one of the May 2017 nominees LePage never appointed, said the board has managed to function with “volunteer” members who participate in meetings but don’t vote, and by partnering with other organizations.

“We wrote some bylaws that really allowed us to function,” Kemmerle said.

The group’s annual report — one of its key responsibilities — includes the following recommendations to Maine DHHS and state lawmakers for improving state services for adults with autism and intellectual disabilities:

— Establish a more formal, transparent process for identifying which of the 1,700 adults on a state waitlist for residential services are next in line.

— Provide adults with intellectual disabilities with regular, reliable transportation that allows them to participate in activities in their communities.

— Make it easier for adults with disabilities who can and want to work to take advantage of job training and counseling.

— When realistic, update those who have reported allegations of abuse and neglect of adults with intellectual disabilities on the status of Adult Protective Services investigations into those reports.

— Establish an independent mortality review committee that investigates deaths of adults in DHHS’ care, in light of federal audit findings last summer that DHHS failed to investigate the deaths of 133 people who died in state care between January 2013 and June 2015. LePage last month vetoed a bill establishing such a review process, and lawmakers upheld the veto.

Maine Focus is a journalism and community engagement initiative at the Bangor Daily News. Questions? Write to mainefocus@bangordailynews.com.